Tomotherapy side effects?

[Keeper70]

Hello, we saw a RO today and based on the 2nd opinion here in AZ, and his interpretation of his PSMA scan; my husband decided to start Radiation via TomoTherapy. Have any of you experienced this; IMRT (targeted ) using CT and targeted to just tumors! Our understanding is that he would have better outcome and could possibly end all ADT, which would be contrary to MO SOC, any thoughts would be welcomed

[Tall_Allen]

Playing whack-a-mole with metastases is no substitute for systemic therapy.

[Keeper70 in reply to Tall_Allen]

Hi TA , I thought you mentioned a while ago that he should have his lymph nodes radiated? This guy has decades of experience and specializes in mostly brachytherapy; but felt this way would potentially offer him a cure and he is a master of his craft😊

[Tall_Allen in reply to Keeper70]

pelvic lymph nodes are different from distant metastases. If all his metastases are in pelvic lymph nodes, by all means irradiate the entire area with 2 yrs of adt+abiraterone. But if any metastases are outside that area, there is no known advantage to playing whack-a-mole, while Adt is known to delay progression. By all means, zap them if it’s safe but not at the expense of systemic therapy.

[Keeper70]

Thank you TA; It’s crazy but when he read the PSMA he did not see distant Mets, There was a spot outside the bladder area that he thinks was a diviurticulum ; not a involved node; hopefully this works but he is being realistic and will continue his SOC/ ADT and Zytiga for now but this treatment has given us more hope anyway

[Tall_Allen in reply to Keeper70]

You wrote in your profile: "Pet scans regularly don’t show lymph node Mets anymore or hip joint mets. " I'm sorry to tell you that once you're metastatic, you're always metastatic. The medicine may have shrunk those bone metastases, but there are thousands of cancer cells in tissue reservoirs that are too small to show up on a scan.

[Keeper70 in reply to Tall_Allen]

Thank you TA, I think we need to understand better what I wrote in his profile! Sorry for my confusion on what’s there or not on his scans

[Keeper70 in reply to Keeper70]

3 distant Mets, pelvic lymph nodes, RO is confident he can control his cancer

[Keeper70 in reply to Tall_Allen]

Hi TA , so today, RO is disputing bone Mets at dx; we sent all cd’s of hubbies bone scans for him to review; may take a few days to arrive, it would be a miracle if it turns out he is M0, not M1, we are getting pelvic MRI tomorrow and TomoTherapy started shortly

[pakb]

My husband had spot radiation to his T4 spinous process for a met that was there before but hadn't been bright on scans in a couple years. But he did not stop his systemic treatments. On follow up scan last March the T4 spot showed significantly less activity. Follow up scans this March- so we'll see how it's doing. The MO abd RO were comfortable doing the radiation because of it's location- hard bone and not near organs.

[RCOG2000]

i have had two eight week sessions of tomotherapy. Side effects were mildly diminished appetite with weight loss. A little feeling like nausea in the AM. A saltine cracker banished this. And . Finally. Fatigue .

[Keeper70 in reply to RCOG2000]

Thank you for that, he’s done pretty well handling SE of ADT and Abi/pred

Kind of scary trying to now figure out TomoTherapy/ IMRT/IGRT, may be starting Monday; but RO still hasn’t presented the treatment plan, days, dose etc, we are only here for 36 more days, they mentioned “doubling” up on RT to finish before we head back 🏡 ( he doesn’t use SpaceOar) should we be concerned? Thanks,

[RCOG2000 in reply to Keeper70]

i will be there wednesday around 1230-1300 if you all are there and wish to say hello

[Keeper70 in reply to RCOG2000]

Love to!! Not sure of any times yet; hopefully starting on Monday13th; we have to travel an hour to get there tho

[Keeper70 in reply to RCOG2000]

Rrrrr, they had machine issues today , hope tomorrow he can start his treatments , what week are you in?

[RCOG2000]

i had eight weeks in georgia after brachytherapy in 2000 then eight weeks 2018 and 2020 and then 5 days in 2021 with dr grado I consider dr grado the main man in my treatment still as he is the most thorough in His exams when i come in for follow up and he always goes over my scans in detail. I do have a mefical oncologist. Dr Bryce at Mayo Clinic

[Keeper70 in reply to RCOG2000]

thank you for the update! We love Dr Grado, he is very thorough, and I like the fact that he reads scans before reading others reports, hoping 28 igrt/ imrt work for him and he does well with few or manageable SE, glad we canconnect

if you want to chat offline, feel free to reach out, I have ?’s , Ty

[RCOG2000]

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